“Don’t get discouraged”

A week before my surgery, I met with my gastrointestinal specialist. I had questions about what to expect after the surgery in terms of bathroom habits, dietary restrictions, and the dreaded butt burn – irritation around the anus that can occur when it suddenly starts working overtime after months of latency.

My GI told me that it would take months for my bowels to adjust to their new setup. He mentioned that since my intestinal villi had been dormant for an extended period, it would take a while for them to wake up and start functioning again. He also mentioned that over time, the tissue of the J-pouch, which is in fact the end of my small intestine, starts to resemble that of a large intestine. Cool! One thing he stressed at our appointment was not to get discouraged if the pelvic pouch wasn’t cooperative right off the bat. Like every other aspect of my recovery, it would take time to reach normality, or at least, a new form of normality.

On my last day in hospital after my surgery, I met with one of Mount Sinai’s dieticians to go over my post-op dietary regimen. Like my GI, the dietician tried to temper my expectations and keep me grounded in the reality of life immediately after an ileostomy reversal. “The first few weeks will be difficult,” she said, “but don’t get discouraged because the pouch will become easier to use over time.” The dietician and I went over the low-fibre diet I would have to adhere to for six weeks. It wasn’t as restrictive as the post-ileostomy diet I had to follow after my first surgery, so I wasn’t too fazed by the limitations. I can eat most things, but I have to be wary of raw fruits and vegetables, nuts, seeds, anything made of corn, and multigrain breads, crackers, etc. As long as I can eat pizza, I’m cool.

Also on my last day in hospital, I received a booklet outlining what to expect during my recovery and how to care for my asshole and my new J-pouch. “There is a period of adaptation with the pelvic pouch. The pouch has to learn to expand and hold onto stool and this takes time,” it said. I remembered reading somewhere else that a person may go between 10 and 20 times a day immediately after his/her pelvic pouch started operating. With all this info in mind, I tried not to set my expectations too high upon my release from hospital.

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In the three or so weeks since I’ve returned home, the pouch has behaved pretty nicely. I’ve developed a bit of a routine in terms of when I eat, and as a result, when I poop. On average I have to empty the pouch seven times a day. The number of times I go each day isn’t an issue, but the amount of time I spend on the toilet during each trip is. Gravity empties the J-pouch, rather than rectal contractions, and as a result, I usually have an initial rush of stool, but then have to wait for additional waves of stool and gas. I sit up, I bend over, I stand up, I sit back down, I lean to one side, I lean to the other, all in hopes that what’s left in the pouch will slide on down and out. I spend about 15-20 minutes in the bathroom during each trip, and that just sucks. I used to wonder why people kept reading material in their bathrooms; now I get it.

During my first several days at home I had pain around my abdomen as a result of the surgery itself. It hurt to change positions in bed. It hurt to blow my nose. It hurt to cough. But the pain waned with each passing day and now it’s gone. I’m proud to say that I didn’t even take one of the painkillers I was prescribed. So hey, if you’re looking to party, I got a bottle of dilaudid with your name on it.

I still feel discomfort around the pelvic region when the pouch fills up or when gas builds up. I can hold in a bowel movement if needed, and I don’t have the same sense of urgency to go that I used to experience when my ulcerative colitis was active. Still, holding it in is uncomfortable, and the longer I hold in a bowel movement, the more pressure I feel around my pelvic region. When I work to hold in a bowel movement, the feeling that I have to poop subsides, but it returns very quickly if I’ve been holding it in for a while. I try to hold in my bowel movements so that I go every 3-4 hours. That’s not to say I spend 3-4 hours fighting the urge to shit, but in that time span I may have several moments of feeling like I have to go.

Despite using some barrier cream and wet wipes to clean up after each bowel movement, I did develop butt burn. It was actually more of an itch than a burn. That doesn’t sound so bad, an itchy butthole, but holy fuck the itch was so intense. Like someone was scraping hot sandpaper around my anus. I discovered that the wet wipes were actually contributing to the problem. They left moisture in the area, and that contributed to the irritation. I started using a handheld bidet to wash my backside after each bowel movement then dabbing the area dry with regular toilet paper. Doing so reduced the irritation, although I still do get a less intense itchy bum from time to time. I apply some Penaten cream around my asshole when it gets itchy, and I clearly have no shame when it comes to sharing this information.

The hardest part of my recovery right now is trying to sleep through the night with as few interruptions as possible. I typically have to get up once or twice each night to go, and as I mentioned earlier, each bathroom trip takes a good 15-20 minutes. That time spent in the bathroom wakes me right up, and I have trouble falling asleep again afterwards. What’s more, through the night I’ll get a few rumblings of gas or stool building up again, and I have to fight the urge to go, which is harder at night when you’re just lying down and trying to sleep. During the day I can distract myself with the internet or something to help quell the urge. No such luck at night.

In spite of the difficulties the recovery from my second surgery has been encouraging, which is largely a result of how bad the recovery from my first surgery was. When I feel discomfort or when I can’t sleep or when I have to stare at the bathroom mirror waiting for my pouch to empty, I just remember how horrid things were after my first operation. At least this time I don’t have a tube in my butt cheek draining an abscess. At least this time I don’t have a wound. At least this time I’m not so rueful of my decision to have surgery.

I had a pretty rough time last night. It may have been what I ate for dinner. It may have been what time I ate dinner. I’m not really sure what caused it, but it was an uncomfortable night. I woke up multiple times either to hold in a shit, or to get up and take one. I spent a lot of time sitting on the toilet, waiting to clear out the stool and gas. I struggled to fall asleep after my bathroom trips. I felt like a sack of shit this morning, and that’s why I decided to write this blog post. To remind myself that this damn body needs time to adjust, to recover. To remind myself that difficulties were expected. To remind myself that things aren’t going so badly. To remind myself that while I want to see progress each day, a bad day shouldn’t derail the whole recovery. To remind myself not to get discouraged. To remind myself that good health is earned over months and years, not nights.

My Book

Three Tablets Twice Daily is a collection of short stories about living with ulcerative colitis. You can pick up a copy from Life Rattle Press or Amazon.ca . Proceeds from book sales benefit the Crohn's and Colitis Foundation of Canada.